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#148084 - 04/11/12 10:40 AM Who felt like a freak before they found this forum
klo Offline
"OCF Down Under"
"Above & Beyond" Member (500+ posts)

Registered: 05/18/10
Posts: 638
Loc: Sydney Australia
Until I found this forum (thanks again Gabe), I was under the impression that Alex was having some peculiar reactions to treatment. A large part of the road to recovery, has been the knowledge that Alex's side effects, and reactions to the situation were normal!!! Once we knew we were normal we could stop wasting our energy beating ourselves(and each other) up and start trying the solutions offered on this website. Even when there were no solutions, just knowing that others had been there before us and got through it went such a long way towards acceptance of the road ahead.

I feel sorry for the people who don't have this support who are allowed to think they are weak, or peculiar or alone.

One of the couples that Alex and I went through with was Dave and Judy. I saw them bickering the same way Alex and I were and the last time I saw them it was clear they were in trouble by the way her jaw was so tightly clenched. I gave Judy my card and asked her to give me a call if she needed to. She never did and I don't know what happened to them. I wish now I had asked for her number rather than given her mine. At least I could have pointed her here and she might have discovered others who understood exactly what they were going through and could have helped.
_________________________
Karen
Love of Life to Alex T4N2M0 SCC Tonsil, BOT, R lymph nodes
Dx March 2010 51yrs. Unresectable. HPV+ve
Tx Chemo x 3+1 cycles(cisplatin,docetaxel,5FU)- complete May 31
Chemoradiation (IMRTx35 + weekly cisplatin)
Finish Aug 27
Return to work 2 years on
3 years out Aug 27 2013 NED smile
Still underweight

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#148089 - 04/11/12 02:29 PM Re: Who felt like a freak before they found this forum [Re: klo]
Anne-Marie Offline
Patient Advocate (old timer, 2000 posts)

Registered: 11/03/06
Posts: 2604
Loc: TN
You raise a good point, Karen. Sometimes it is harder to ask for or even accept help from someone you know because of so many reasons including feeling weak and alone and not wanting to admit you are scared. I had always had a difficult time asking for help with anything. The very best thing that happened to me was when that nice young man, who was waiting for his turn for his Rad Tx, got up, and as he left for his TX, bent down and whispered to me "Go to Oralcancerfoundation.org". I did - I found the caring help here and I found my strength. I was no longer alone. Now - Life is good!
_________________________
Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)




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#148095 - 04/11/12 03:14 PM Re: Who felt like a freak before they found this forum [Re: Anne-Marie]
Cheryld Offline
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)

Registered: 12/22/10
Posts: 4976
Loc: Toronto canada
This is a great forum.. I was blessed to find it as soon as I was diagnosed...It may have something to do with my desire to know all about it... it was terrifying but liberating too. Thankfully, because of the knowledge of people here I have been very fortunate to not have had too many heart stopping moments, this is of course because we do talk about everything here and usually someone has experienced what you are going through, side effect, etc... god bless to all ;o)
_________________________
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan

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#148097 - 04/11/12 03:23 PM Re: Who felt like a freak before they found this forum [Re: Cheryld]
Maria Offline
"Above & Beyond" Member (500+ posts)

Registered: 07/15/11
Posts: 874
Loc: Ohio
My husband was glad to know that that another forum member noted that the anti-fungal lozenges made her mouth feel less sensitive and that it wasn't 'just him'. Besides the overriding life and death issues, this forum is tremendous with dealing with the day to day stuff that so greatly impacts quality of life.
_________________________
CG to husband - SCC Tonsil T1N2M0 HPV+ Never Smoker
First symptoms 7/2010, DX 12/2010
TX 40 IRMT (1.8 gy) + 10 Cetuximab
PET Scans 6/2011 + 3/2012 clear, 06/2014 physical exam clear; chest CT's clear of cancer. On thyroid pills. Saliva slowly returning. Life is good.

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#148104 - 04/11/12 04:13 PM Re: Who felt like a freak before they found this forum [Re: Maria]
EricS Offline
Patient Advocate (1000+ posts)

Registered: 01/03/09
Posts: 1844
Loc: Idaho
I went for 11 months before finding these forums, all the way through diagnosis, rads/chemo and then my first major surgery before I found OCF. I was laying in bed hopped up on ridiculous amounts of fentanyl and oxy and a slew of other drugs and feeling very hopeless really. It's been a light for me that's for sure and I'm very thankful to have the people here in my life.
_________________________
Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.

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#148108 - 04/11/12 05:44 PM Re: Who felt like a freak before they found this forum [Re: EricS]
Kerri Offline
"Above & Beyond" Member (500+ posts)

Registered: 08/08/11
Posts: 508
Loc: MA
Anne-Marie,

That was such a nice act by that man you encountered at your radiation treatment! It's like we're all in this war together. Some of us are veterans and others are just entering their first battle. We all have such a strong bond and unspoken connection because of this disease.

I won't ask who it was, but I am curious to know if you ever crossed paths with this man on OCF. Now, that would be cool!

BTW, great sharing from everyone here. I'm so grateful that we have come together in solidarity to fight OC and support one another. I can't say enough! Thank you, Brian Hill for founding this organization!

smile Kerri
_________________________
37 y/o fem at Dx (23 wks preg @ dx on 3/16/11)
SCC L oral tongue (no risk factors)
L partial gloss/SND 3/28/11 @ 25 wks preg
T1-2N0M0; no rads/chemo
Tonsillectomy on 8/6/12 +SCC L tonsil T2-3N1M0 (HPV-)
Treated with 35 rads/7 carbo & taxol (Rx ended 10/31/12), but many hospitalizations d/t complications from rx.
Various scans since rx ended are NED!
Part of genetic study for rare cancers @ MGH.
Just turned 40 and grateful! Hoping for 40 more!

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#148110 - 04/11/12 06:40 PM Re: Who felt like a freak before they found this forum [Re: Kerri]
Anne-Marie Offline
Patient Advocate (old timer, 2000 posts)

Registered: 11/03/06
Posts: 2604
Loc: TN
Kerri -I never did meet up with him again (it would be cool!) but he was in the next town to mine and we had the same ENT. He was same age as my son who was going though Rad Tx. Life is good for him, too!
_________________________
Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)




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#148143 - 04/12/12 01:32 PM Re: Who felt like a freak before they found this forum [Re: Anne-Marie]
davidcpa Offline

Administrator, Senior Patient Advocate
Patient Advocate (old timer, 2000 posts)

Registered: 09/28/06
Posts: 8309
Loc: Gulfport, Florida
Unfortunately I went through my Tx before Brian found me on another OC site which took literally days to get an answer to a post. Even finding this site post Tx was still a blessing.
_________________________
David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 14, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.

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#148150 - 04/12/12 04:19 PM Re: Who felt like a freak before they found this forum [Re: davidcpa]
David2 Offline
Patient Advocate (1000+ posts)

Registered: 07/12/09
Posts: 1272
Loc: Los Angeles
David, agreed. Although this site was mentioned in the rather voluminous literature I was given before starting radiation, I think I was too numb by the whole thing to really look into online resources. It was only later after the end of treatments that I found OCF, after first exploring a couple of others that were fine for what they were, but nothing at all as comprehensive and wonderful as this place.
_________________________
David 2
SCC of occult origin 1/09 (age 55)| Stage II TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 5 years all clear in 6/14

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#148162 - 04/12/12 08:09 PM Re: Who felt like a freak before they found this forum [Re: David2]
SUEZ Offline
"Above & Beyond" Member (500+ posts)

Registered: 07/21/10
Posts: 531
Loc: AURORA, OH
Most definately this sight as helped me sooo much with what Ron had/has gone thru! Even though he won't come on here it has helped him so much and me because I now know what the norm is with what he is feeling and was tasting and how he did get better and how long it would take. I would have lost my mind with the not knowing, glad I'm a very curious person and know how to use the internet and the web to go in search of any answer I need to any questions I have. As the old disco song from 1979 by Sister Sledge goes
"WE ARE FAMILY"
_________________________
CG to Ron
Out of Pain 4/3/13
4/12-lung and under chin growth no treatment
1/13/12 lung biopsy
6/11 recur 6/30 resection #2 Clear margins
Clear 12/10
Surg 5/13/10 neck dis/nodes part gloss/flap R thigh all teeth out
RAD 30 8/10
DX 4/2/10 "Oral Cavity" T3NOMO
12/28/07 Non Hodg Lymph remission 7/08

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